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The power of Letrozole-some good news.

17 REPLIES 17
Member

Re: The power of Letrozole-some good news.

Hi Chick!

 

Oh dear-it sounds like you were having technical difficulties! Thanks for clarifying. I just didn't want you to thinking I neglected the link (it obviously wasn't there the first time I repliedSmiley Happy

 

I, too, was very healthy pre-my diagnosis in that I was dairy and meat free (and have been for years) and so I agree, a healthy diet doesn't necessarily prevent cancer from developing, *but* what I did not know about, was how important other foods are, i.e., nuts, seeds, tumeric, flaxseed, chai seeds, etc. etc. and so I'm ingesting many more of them than I ever was before, and who knows-this could also be contributing to the shrinkage-one can't know when more than 1 variable is involved but all I can say is I am doing my very best (including weight loss)-I weigh 127 lbs...was 147 pre-Christmas and it all seems to be paying off. We all need to do what *we* believe is good for us, and not be swayed by other people's views/opinions or by what we read, but merely allow ourselves to be informed and then make the right decision for ourselves. 

 

Thank you for your well wishes...I send you the very same and hope you continue to do well. 

xxxx 

 

Community Champion

Re: The power of Letrozole-some good news.

Hello again Maria,

Just to explain about " the link being added later" in my Post below.  I am having to use my phone to respond at the moment and it can be a nightmare!  I try and correct something, the cursor will not go where it is told, the page jumps and next minute the unfinished Post has been posted 😡. I was responding to something today and had to edit 4x because it kept jumping and posting.

That trivia aside,  as said before, totally agree with the healthy weight, activity, eating and drinking lifestyle.  It did not prevent my cancer but who knows, without it I may have been in a worse position so along the same route I will continue. 

That is so interesting about the impression of competition of treatment etc. I would not even have thought of that. I think perhaps there may be a lack of understanding about how various cancers respond to different treatments.  One good thing about having neo adjuvent treatment, whichever type is apt for the individual circumstances, is you can see how effective it is being on the actual cancer.

Anyway, just sending you best wishes again and may your tumour shrink to bleeding oblivion. 

Chick 🐥 x

Highlighted
Member

Re: The power of Letrozole-some good news.

Thanks very much Evie for your well wishes and support and encouragement. I'm so very pleased to hear you finished radiotherapy 2 years ago. I hope you continue to do really well! And I, too, can relate to your story re-your consultant's response...at the beginning I was reading a lot about other women's experiences (on here mainly)-just to educate myself and it's amazing how some doctors welcome the questions, etc. and others don't so much. My breast surgeon is amazing and quite tolerant of my questions but my oncologist didn't seem to like me asking about the effects of different "brands" of Letrozole (I had read some women got on well with some and didn't get on well with other brands)-my oncologist dismissed the fact that there are any differences whatsoever and did make me feel a little "diminished". As it ends up, I have been on more than 1 brand (since October) and I can't really tell any difference. 

 

xxx

Member

Re: The power of Letrozole-some good news.

Hi Marla

Many thanks for reassuring me that I hadn’t put my large foot in it and offended you. I can totally relate to your message - the bit about wanting to know why I wasn’t offered something I have read about (hence my poor consultant telling me to stop reading 🙈). That said, I agree with you that it’s really good for us all to share what advice we have been given so we can make informed choices and also understand what treatment we have been given or will be given. Wise words.

I finished radiotherapy about 2 years ago, hard to believe it’s that long ago already. Thanks for your kind wishes and all the best for your next step.

Evie xx

 

Member

Re: The power of Letrozole-some good news.

Hi Evie,

 

Thanks for you message, and no, my message re-"competition" wasn't directed at you at all. It's more that I'm aware it is easy for us all to think "why is she having "X"-I want some of that too" or "why was she recommended "X" when I haven't been by my own doctors". Over the last 9 months (since my diagnosis) I've read about so many women's stories, and for every hospital/doctor/ there seem to be as many different protocols/recommendations, etc. And we've all got to be mindful a) there may be good reasons why our own doctors are recommending "X" for *us* but also b) maybe there *are* options that we were not aware of, and by posting here, we can all help one another be more aware of what those are. 

 

But I honestly didn't mean for you to feel I was implying that I thought *you* were competing with me-not at all. 

 

I really appreciate your last message, and I hope that wherever you are along your journey, that you are doing well! 

xxxx

 

Member

Re: The power of Letrozole-some good news.

Hi Marla

Thanks for your kind wishes. I think it’s great that you have shared your experience with Letrozole on here so that others know what options are out there. I hope I didn’t make you feel as if you were in a competition with chemo - my apologies if I worded my mail clumsily. When I was diagnosed I found myself on the treadmill and starting chemo within days of diagnosis - so didn’t have a chance or the head space to research anything. For others who have just been diagnosed it will be good for them to read your post.

 

I initially clicked on your post as my consultant may be changing me from Tamoxifen to Letrozole or one of the other AIs, so I am always checking out what side effects others have experienced.

 

Good news on your weight loss too. It’s a minefield out there - always hard to know what to believe/eat/do. My consultant kept telling me to stop reading newspapers as I was forever arriving with the “latest news” 😆, which was often wrong or out of date. I agree with you, that we are all individual and we must do what we feel is best for us. That helps the mind as well as the body.

 

Sorry, that was longer than I planned! Evie xx

Member

Re: The power of Letrozole-some good news.

Thanks so much Paulus-I hope you are doing well. Yes, it's such an individual choice, and I appreciate that Letrozole doesn't suit everyone-some women feel really poorly on it. I'm fortunate that I can afford to delay surgery, i.e., my surgeon says I am not in danger, and whilst I understand that I'm the only one you know on here to choose this path, I know that I'm not alone-it was another woman's story (on the Macmillan www) that educated *me* about Letrozole "pre" surgery; her cancer shrank 50%, so I thought to myself "why not try and see" before surgery. There is a lot of evidence out there in support of Letrozole helping women who can't have surgery; I know of a woman (through her son)-her age and other health conditions mean surgery is not an option and so she relies on Letrozole to keep her alive. And I will never forget one of the first things my own surgeon said to me re-my decision to defer surgery; she said as long as I am on Letrozole, she is not worried because the Letrozole is more important re-saving my life than the surgery, for the simple reason it stops the cancer from growing & shrinks it. Surgery will remove what is there but obviously we all know that it can grow back at any time. All this to say that Letrozole works-it's just a matter of whether we choose to take it. There are a lot of deciding factors, and it *is* a cost-benefit analysis, and I respect any woman's decision to *not* take it, as long as the decision is informed-which I know yours is! Sending you lots of hugs....

xxxxx

 

Member

Re: The power of Letrozole-some good news.

Marla I think it's fabulous that letrozole has done its' good work for you, as you are the only person I know on here who has taken/was recommended this course of action.  You and I go back to last year, and I remember your early days of confusion and decision-making, and then this became your chosen path.  It will be terrific for you if it can shrink it enough for you to have lumpectomy with clear margins ( if you so wish ) and I will be so happy for you if that comes to be.

 

Most of us seem to be offered the letrozole as follow-up, keep-it-at-bay treatment, after we have had surgery, so I guess that's why so many of us weigh up the side-effects.  For me, it's about my age (64), DEXA scan and latest bone scan showing ostopoenia (I get back problems anyway!) and into the mix, my refusal to take bisphosphonates.  As my consultant quietly agreed, it's all a 'trade-off' in the end, and we have to factor in our own feelings and way of life along with medical recommendations.

 

Good to see you here x

Member

Re: The power of Letrozole-some good news.

Thanks Evie! I'm also pleased to hear your chemo worked! I will keep on repeating-we all have different cancers, and therefore, our treatments will all be different. Some of us need chemo, others don't. It's not a competition, but it can sometimes feel as if it were one. 

 

As long as our own treatments are working for *us*-this is all that matters.

 

I hope you continue to do well in your recovery...

xxxx 

Member

Re: The power of Letrozole-some good news.

Hi Chick,

 

I just wanted to respond to your post again, in particular re-sugar (I think you added the link after I replied the first time)Smiley Happy.

 

Yes, there are many myths around cancer and what foods to eat/not to eat, and I'm not at all suggesting that all sugars are created equally, but I'm doing all *I* can to give myself the best chance to shrink my cancer such that I have a choice of treatments, and in my efforts at reducing my sugar intake (nearly 100%)-I've lost 20 pounds. The weight loss itself is significant re-cancer because there is also research out there that shows a link between BMI=overweight & cancer. I realise we all have different opinions about what works, what doesn't, and what leads to cancer, and what doesn't, and yes, for every overweight cancer patient we will all know one with a healthy BMI. But for *me*-this seems to be helping me. Everything I am doing *I believe* is helping. Whether it is or not, is another story. Truthfully, because I have made many changes in my diet *and* I am taking Letrozole-it's hard to know whether the Letrozole, my diet, or a bit of both that is helping my cancer along, i.e., shrinking. As I said before-it's up to each of us to educate ourselves and make the decisions *we* feel is right for us.

xxx

Member

Re: The power of Letrozole-some good news.

Hi Marla and Chick

Marla - that’s wonderful news about how well Letrozole has worked, I wasn’t even aware it could do that. Chemo shrunk mine (like absolutelyannie said) - which I had to have anyway. I really wish you all the best and hope a lumpectomy works for you.

Chick - thanks for posting the link to the cancer myths blog, that was really useful. There is so much info and misinformation out there - to scare us half to death!

Evie xx

Member

Re: The power of Letrozole-some good news.

Thanks very much Chick! I couldn't be more thrilled-more so because my last consult appt. was the 1st appt. where my surgeon seemed quite optimistic and happy to try lumpectomy first, and if all clear margins-great, and if margins not clear then onto mastectomy. The thing about Letrozole is that nobody can predict how well a tumour/cancer will respond, for each individual woman-it's a matter of wait and see. I do realise I'm in a fortunate position where it isn't in the lymph nodes and I am not putting myself in any danger by deferring surgery. My surgeon has reassured me of this numerous times. And so my message to all women is: do your research, be sensible, ask questions, and decide for yourself-with all the available info. you have to hand-it's yours, and yours alone, to make. 

xxxx

Community Champion

Re: The power of Letrozole-some good news.

Hello Maria, 

That is bleeding brilliant that the cancer has responded so well to pre-surgery Letro.  I hope it continues to shrink and you are able to have your desired treatment of lumpectomy.  Well done you as well for sticking with it as it can be time intensive.

You sound so positive and I totally agree with the healthy eating and drinking route.  However, I think it an oversimplification to say sugar feeds cancer. Food gets broken down into sugars anyway. Not saying you should agree as we are all entitled to our own opinions. I have attached a link which I think explains why I think it an oversimplification. 

Anyway, just wanted to wish you all the best. 

https://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths...

Regards,

Chick 🐥 x

Member

Re: The power of Letrozole-some good news.

Hi Kathy,

 

I understand what you are saying, but without the raw data to hand, we don't really know how many women are given Letrozole pre-surgery, and how many are put on it after surgery...do we? I do know of others (on this forum) who were prescribed Letrozole pre-surgery, and as I said in my earlier message, when the cancer is Estrogen +, Her2 negative (and hasn't spread to the lymph nodes) there is good reason to "test out" the effects of the Letrozole, especially if the woman wants to keep her breast (s). It can make the difference between a lumpectomy versus mastectomy, and why shouldn't we have that choice?

https://www.targetedonc.com/news/certain-breast-cancer-patients-find-endocrine-therapy-ideal

xx

Member

Re: The power of Letrozole-some good news.

I think  the point is that most people are on AIs after having had surgery to remove the tumour and/or after chemo where there's been a complete pathological response. Most people don't take an AI to reduce the size of the tumour first, although it's obviously good news that it's worked that way for you.

Member

Re: The power of Letrozole-some good news.

Hi Annie,

 

What's so strange about my story? Please keep in mind that there are *many* different types of breast cancers, and some women *do* need chemo to shrink their tumours. My BC is Estrogen + (Her2 negative). And my oncotype score was "1" (suggesting chemo would not add anything to my treatment regiment). 

 

I'm sure if you were recommended chemo, it was for good reason, but then again, I don't know anything about you or your type of cancer and I would recommend to *all* women to do their own research and ask their own questions. 

xxxx

 

Member

Re: The power of Letrozole-some good news.

That is strange. I had to have chemotherapy to shrink my tumor and post surgery will have to take Letrozole for 5 years.

Member

The power of Letrozole-some good news.

Hello ladies-it has been months since I've posted, probably because I know where I stand and am not having to make any decisions at the moment (I arrived on this forum last August after my Grade 2 diagnosis) not knowing anything about anything. But now that I am much more informed, I've weened myself away from the forum only to be able to have a break from "thinking" about my breast cancer on a daily basis and live my life, etc.

 

However, I wanted to share some good news with you. I have been on Letrozole since October, and whilst I was supposed to have a mastectomy last November (that was the plan)-I decided to defer surgery and give Letrozole a chance to shrink my cancer. I had read about another woman's experience on Letrozole-she was on it for 15 months and her cancer shrunk by 50%. 

 

I've just had my 2nd MRI (post Letrozole) & my cancer continues to shrink (it is less enhanced on MRI)-my surgeon is very happy with how I am responding & is happy for me to continue on Letrozole to see how much further is shrinks. At the point I stop responding to it, she will then opt for a lumectomy (if that's what I want) and if she gets clear margins, great, and if not, then it's onto a mastectomy, but at least she sees there is a point in going for lumpectomy first (if I do want to keep my breast)-which I do.

 

I am sharing this with you because despite all of the side effects that many women experience-Letrozole does do it's job (in shrinking estrogen positive cancer) & it's a matter of considering both the pros and cons of the drug.

 

And re-the "brand" debate...I have been on more than one brand, and frankly, don't notice a difference. 

 

It's really important to exercise, to stretch, and to eat well-to help the drug to help *you*. My diet has become so healthy since January-I have cut out all sugar from my diet, except for the very rare glass of wine (I've had no more than 8 drinks since January). Sugar feeds breast cancer. I eat a lot of nuts, seeds (linseed, flax seed, pomegranate seeds) and I am sure all this is helping the drug alongSmiley Happy

 

If Letrozole allows me the choice between a lumpectomy and mastectomy then I am more than happy to tolerate the side effects for as long as necessary. Maybe I've just been lucky but I don't feel too bad on it. Then again, I forget what "normal" feels like anyways! 

xxxx